MCWPA was set up to create change by getting the message to the public. The science is going our way, but the public needs to know this so changes can be made to positively affect patient quality of life. While we find what seems to be a concerted effort to spread misinformation, we encourage patients to go on the offensive and create the change in public opinions. By pushing our message, we make things happen, we make the news, instead of reacting to it.
We all know that the research of the biological nature of this illness has not been getting to the physicians. This is detrimental to patient quality of life in that a majority of patients have little or no access to knowledgeable medical care. We also acknowledge that this physician ignorance contributes to patient challenges in documenting their disability.
Just like everything else with this disease, we find we have to do it ourselves. PANDORA and CFS Solutions of West Michigan have come up with this idea of physician education and would like patients to participate. When we asked patients if they wanted MCWPA to support Doctors Need to Know, a PANDORA and CFS Solutions of West Michigan project, this received the third most votes.
To accomplish this, we suggest patients write five hand-written letters to five different local physicians. Also, we suggest you include two documents about the illness. So, here is what is required to participate:
Time (about 30 minutes) to write five letters
Time (about 30 minutes) to find physicians in the local area and address the envelopes
Total of 25 pieces of paper
Postage (in US, about $2.50)
Campaign will continue from March 1-15.Letter
The suggestion of a hand-written letter is because it will hopefully cut through the clutter of other letters and draw attention of assistants and physicians. It will look personal, just like people sift through their own mail and anything hand-written catches the eye because it is likely something personal. But this is only a suggestion. If you find writing five short letters by hand too difficult, please do what you can.Suggested letter content:
I am an ME/CFS (chronic fatigue syndrome) patient who lives in ______________________. I thought you might be interested in these documents of recent scientific developments in ME/CFS. If you would like more information, go to the IACFS/ME website or contact me.
Thank you for your attention.
In selecting a physician, we understand that many patients will want to send this to their personal physicians. That's great. But we also want to educate physicians who have misconceptions of the illness, ones unfamiliar with the illness. So we suggest patients select a family practitioner, internist, primary care physician and / or infectious disease doctor who is close to your residence.Here are some links to finding physicians:UK: http://www.nhs.uk/servicedirectories/Pa ... earch.aspxCanada
British Columbia: https://www.cpsbc.ca/node/216
New Brunswick: http://www.cpsnb.org/webdata/drdbase_form.shtml
Newfoundland and Labrador: http://www.cpsnl.ca/default.asp
Nova Scotia: http://www.gov.ns.ca/health/physicians/
Yukon territory: http://www.yukonmedicalcouncil.ca/find_doctor.html
Northwest Territoories: http://www.cma.ca/index.php?ci_id=39575&la_id=1US: http://doctor.webmd.com/physician_finder/home.aspx?sponsor=core
or http://www.findadoc.com/Australia: http://healthengine.com.au/index.php
If your country is not listed above, feel free to post your country's physician finder website after this post.Articles:
We suggest sending only one or two of these articles, whichever you choose. It is very tempting to mail lots of information and multiple articles. However, we also want the physicians to read what we send them and not throw it away because it is too much. We also want to minimize the cost to the patients of sending more and the time and cost in printing out more. Simple, easy and uncluttered is the goal. Good for patients and good to make sure doctors read what we send them. So please be selective.
Click on the link, print it out on your printer, then include in the letter.Viruses Found in ME/CFS
(NIH article) http://mcwpa.org/wp-content/uploads/2011/01/Viruses-Found-in-Chronic-Fatigue-Syndrome-Patients.pdf
(two pages long)Press Release of Proteins as a Possible Biomarker http://mcwpa.org/wp-content/uploads/201 ... ndrome.pdf
(one page long)Announcement of WPI study http://mcwpa.org/wp-content/uploads/2011/02/Retroviral-Link-to-Chronic-Fatigue-Syndrome-National-Cancer-Institute.pdf
(two pages long)Biological Abnormalities (according to Dr. Anthony Komaroff) http://www.cfids.org/cfidslink/2007/062004.pdf
(one page long)
Thank you for participating. Some have asked if they can send more than five letters. The answer is of course. Even if a physician gets multiple letters from multiple patients, that is good. But considering patient limitations, we suggest at least five, if possible.One Last Thing:
Now, not quite done. When you have sent the letters, e-mail me at email@example.com
to let me know you did it. We want to keep a count.